Ralph’s Story 🦋 | Ciara

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Recently, sharing my harder feelings has brought lovely messages from people concerned about me. I know they come from kindness, and I’m grateful. 🤍 But some have quite bluntly told me to “get help”, which can feel dismissive when I’m simply being honest. Please know: I am looking after myself. I have professional therapy and support. Sharing here isn’t a cry for help. I share for the mum frightened to say her postpartum feelings out loud. For the parent processing a life-changing diagnosis. For those who adore their child but grieve the life they imagined for them. So someone can think, “It isn’t just me.” I also share to raise awareness of EB’s hidden realities. The emotional weight, the fear, and what it means to watch your child hurt. And because writing helps me carry it. Having support doesn’t erase difficult feelings. There needs to be room for the darker thoughts and intrusive feelings, without making someone feel they’ve said too much. Please keep caring. But alongside “have you spoken to someone?”, there’s room for “I hear you.” We shouldn’t have to make our pain sound more comfortable for it to be okay to share. #eb #awareness #postpartummentalhealth #motherhood

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I call him Ralphie Roo because the second you try to put him to bed, he turns into a kangaroo 🦘🤍 he knows he’s being cheeky!! P.S. Don’t mind the soaking wet mittens 🙈 He’s teething and spends all day sucking on them, so no matter how many times we change them, they’re soaked again in minutes! #baby #cute #motherhood #awareness #sleepdeprived

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Jesy Nelson added her voice to years of campaigning for SMA newborn screening, helping the community finally get that commitment over the line. Prime Minister Andy Burnham, who lost his dad to Alzheimer’s, has recently announced a £48 million dementia research partnership. Those communities deserve every bit of that progress. And behind those moments are years of work by families, charities and researchers. But I can’t help asking: why does change seem to move faster when the suffering becomes personal to someone with power or influence? EB has incredible advocates. Eddie and Jill Vedder, Graham Souness and Tom Holland have all used their platforms to help, alongside families and charities who work tirelessly. Their support matters. But what will it take for EB to become an urgent priority for the people who decide where funding goes and how quickly things move? Does someone with the power or influence to drive change have to watch their own child blister? Carry out painful dressing changes? Hear those cries before they understand why we cannot keep waiting? I wouldn’t wish this on anyone. I just wish our children’s suffering could create that same urgency without it having to become their own. We are already telling them. Showing them. Campaigning. Fundraising. Ralph shouldn’t have to be their child for his pain to matter as much as if he were. 😤 If you haven’t already, please sign our petitions ❤️ #awareness #motherhood #baby #parenthood